Lyme disease, caused by deer-tick bite, is called a 'great imitator' because symptoms can mimic other ailments; often misdiagnosed

Wendy Thomas and her son, Griffin, who was diagnosed
with Lyme disease, after seven years and 11 doctors

Kentucky Health News

Cases of Lyme disease have tripled since the 1990s and with tick season expected to be especially heavy this year, it could also be a bad year for Lyme -- a disease that is often hard to diagnose.

Wendy Thomas of New Hampshire told Linda Carroll of NBC News that it took seven years and 11 doctors before her son, Griffin, was diagnosed with Lyme disease, after suffering with "rashes, breathing problems, swollen fingers, back pain, knee pain and ankle pain."

Thomas told Carroll that he had been tested early on for Lyme disease, but it came back negative. And that it wasn't until a friend suggested that Griffin, now 24, could have Lyme, despite the negative test, that she investigated it online and discovered that "every one of Griffin's symptoms was on the list," Carroll reports.

“We wasted so many years," said Thomas, 58. "In hindsight it was so obvious."

Lyme disease is caused by bacteria that are carried and transmitted to humans by black-legged ticks, which are also called deer ticks.

Centers for Disease Control and Prevention illustration

The federal Centers for Disease Control and Prevention says the early signs and symptoms of Lyme disease are fever, headaches, chills, fatigue, muscle and joint aches and swollen lymph nodes. Another common symptom is a rash that looks like a "bull's-eye" as it gets larger, but not everyone who has Lyme disease gets this rash.

Early and accurate diagnosis is important because it can be treated with an antibiotic. But this is a challenge because not everyone remembers being bitten by a tick, and many don't get that bull's-eye rash. And without these, the other symptoms are clinically similar to other diseases, which makes it harder to diagnose.

Symptoms can also linger for months and can come and go. They include severe headaches and neck stiffness, rashes on other parts of the body, arthritis,drooping on one or both sides of the face, intermittent pain in tendons, joints and bones, heart palpitations, dizziness, shortness of breath, brain inflammation, nerve pain and problems with short-term memory, often called "brain fog."

"There are a host of diseases that can be misinterpreted as Lyme and vice versa. Lyme can be present and look like something else, such as MS, fibromyalgia, ALS, dementia. Lyme is called ‘the great imitator’ for that reason," Philip Tierno, a professor of microbiology and pathology at New York University’s School of Medicine, told Carroll.

Rafal Tokarz, an associate research scientist at Columbia University, told Carroll there needs to be a better diagnostic test for Lyme disease because not everyone has enough of an immune response in their system to respond to the current test.

The best ways to protect yourself from ticks is to avoid grassy, wooded and leaf-covered areas; keep grass and shrubs trimmed and cleared away; walk in the center of walking trails; wear light-colored clothes, which make it easier to spot ticks; wear long pants tucked into boots and tuck in your shirts; use tick repellent that has DEET or picaridin in it; do a body check at the end of each day; check your pets and equipment for ticks; and shower after potential exposure.

While the greatest risk for getting Lyme disease remains in the Northeast, mid-Atlantic and upper Midwest, it is spreading to a wider area of the country. Kentucky had 12 confirmed cases and 37 probable ones in 2015, according to the CDC. Tick season in Kentucky runs through August, but a case was reported in February in Knox County. The southeastern Kentucky county has recently reported about eight cases of Rocky Mountain spotted fever, transmitted by dog ticks, reports the Barbourville Mountain Advocate. The weekly newspaper combined its local information with a Kentucky Health News story and graphics to make a strong presentation about the dangers of ticks. For a full-size version of the page, click here.